Primary Immunodeficiency

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Primary Immunodeficiency
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    Community Voices

    A Little About Me

    My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
    I have been featured on my local news station and interviewer for our newspaper.
    I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
    I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
    My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
    I hope to learn from you all and hopefully, you'll gain insights from me.

    #PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome

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    Community Voices

    I'm new here!

    Hi, I have recently been diagnosed with S.A.D. (Selective antibody deficiency) my doctor is booked out and it will be a month before we can discuss treatment options. I have found limited resources online. I’m just looking for any info, insight, perspective, experience on the issue. Thanks in advance. #PrimaryImmunodeficiency

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    Community Voices

    What Helps a Man in His Fifties With Primary Immunodeficiency

    With our ongoing “What Helps Me” series, The Mighty is leaning into what sets us apart from other health sites: We aim to provide real health advice from real people who live it. In this spirit, we asked our community for the best insights and tips they’ve developed for managing their conditions. As always, they responded with their unique health stories and we are happy to pass along their well-tested resources to you. Responses have been lightly edited for length and clarity. Today, we meet Mighty member Todd. He is 58 years old and lives with primary immunodeficiency. Todd, what helps you? THE MIGHTY: What helps you most when your condition affects your physical health? TODD: Because I have an immune system that does not protect me, I am always heavily medicated, and I rely on immunoglobulin replacement therapy to keep me healthy. Along with that comes an array of other health problems and other areas of my body that do not work the way they were intended to. This includes food allergies, intolerances, and sensitivities. I stay close to the same schedule every day, regardless of holidays and weekends, take my medications at the same time each day, and closely monitor the foods I eat and the beverages I drink. Consistency is key to stabilizing my physical health each day. Body awareness helps me catch developing symptoms before they reach a crisis stage. For symptoms I can manage on my own, I keep a supply of over-the-counter medications to help me. For symptoms that require a doctor’s attention, I am quick to call my immunologist and reach out for help. The most challenging aspect of being chronically ill is the unexpected flares in my symptoms. These often require numerous trips to doctors, repeated blood tests, and other procedures to bring them under control. Here again, body awareness is key. The earlier I catch the symptoms and address them, the quicker the flare passes. What helps you most when your condition affects your mental health? Being chronically ill is a daily challenge — emotionally as well as physically. There is [an] ongoing monotony of living with the daily symptoms. This takes real fortitude, and chronic illness can grind even the strongest person down. Chronic illness is often relentless. It never stops. It never sleeps. With a good routine and good medical care, my daily symptoms become “background noise” most days. The most difficult days are those days when other things in my life are not going well, and I have those problems on top of my chronic illness. Most days, maintaining an attitude of “this too shall pass” helps me. On the really hard days, I reach out to my church and pastor as well as a couple of close friends for support. Most often, I am reaching out for support when life throws me curveballs on top of a flare. Support does not solve my problems — I still have to solve my own problems. But support sure does make the load feel lighter and more manageable. How do you cope when your normal self-care isn’t working? When normal self-care does not work, it is usually because a flare or some other crisis is developing. These are truly trying times. It can be so easy to lose perspective and to want to give up in the face of all of my challenges. Like many others may, I long for a miracle cure or a quick fix, even though these rarely exist. Solving the problem usually takes far longer and requires far more effort than I would like. Patience and perseverance get me through these times, but finding it when I feel my worst is the most difficult thing in the world. It would be so easy to give up, so easy to want to quit, and so easy to stop trying,  but I remember all of my reasons for continuing to fight, to try, and to live. I lighten my load as much as possible and reach out for help. With encouragement from family, friends, and coworkers, I fight on. Eventually, little by little, my crisis or flare passes, and I am thankful I did not give up. Thank you to Todd for his contributions to our community. Did you find this helpful? Add your gratitude in the comments. If you want to tell us what helps you, you can complete our survey here .

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    Finding My New ‘Normal’ With Primary Immunodeficiency

    I was always a “sick kid.” This meant lots of ear infections, an asthma diagnosis in my early 20s, and more visits to doctor’s offices than I could ever count. In nursing school, I would get sick frequently. It was always brushed off because “everyone catches everything” when you’re in training. But I caught everything . I was getting sick every other month, and it always took me longer to recover. I also experienced constant, severe fatigue. I noticed I needed more sleep than my peers, and I was still tired all of the time. I was feeling progressively worse, so I started going to specialists to try and find answers. A pulmonologist decided to get my Immunoglobulin G (IgG) levels tested. This one test, which measured the function of my immune system and its ability to fight off infections changed everything. Sure enough, my levels were not very good, so he sent me to see an immunologist. If this doctor had not thought outside the box, and if I had not gotten that one test, who knows when I would have found the answers to my life-long health challenges. After seeing the immunologist, I finally got the diagnosis that explained everything I had gone through my whole life: common variable immune deficiency , a type of primary immunodeficiency (PI) disease. Living with PI simply means my body’s immune system isn’t working like it should. Unlike autoimmune disorders, where your body is fighting against itself, with PIs, your immune system has trouble fighting at all. 1 This explained why I was always more vulnerable to infections and why it always took me so long to recover. PI is rare, affecting 1 in 1,200 people in the U.S. 2 , and there are over 450 different types. 3 My family, especially my parents, was overjoyed at my diagnosis because now we knew what was going on and could do something about it. It was also nice to have validation. Doctors had accused me of faking it and had dismissed my symptoms in the past. For me, though, the relief was complicated. Getting this diagnosis meant acknowledging I was a “sick person” who had a chronic condition that wouldn’t go away. Like other people who face health challenges, it’s hard to pretend you don’t want to be “normal” every once in a while. Unfortunately, my unwillingness to accept the reality of my condition affected my decisions about treatment. I was willing to try different antibiotics, but getting immunoglobulin (Ig) therapy like my doctor recommended, which replaces the antibodies (immunoglobulins) that are missing or not working properly in people with PI, intimidated me. 4 After two years, I finally got so sick my doctor simply said, “Listen, this isn’t working.” I agreed that Ig therapy was worth trying. Despite my initial hesitation, I was relieved when we finally started. I was able to get my infusions at home (I’m a nurse, and didn’t want to spend even more time at the hospital!). My mom is a nurse too, so in the beginning it was comforting to know she’d be right there with me. The management plan that my doctor and I agreed on together has become part of my new normal, and my husband and I use my weekly infusions to spend time together. We’ll order pizza, watch a movie, and snuggle up with our dog. Now, I personally understand the importance of donating plasma. Plasma is a specific part of the blood filled with immune cells needed to fight off infections — and it’s how they can make IgG therapies. 5,6 When people donate plasma, it makes these therapies available for people like me. I want people with PI to know that even though our “normal” might look different, I got married, am looking forward to having a family, and have hobbies I enjoy. I love crafting, painting, and have a weird obsession with tie dye.  I’ve also been lucky to have such a supportive family, and the connections I’ve made through MyIgSource have been invaluable as well. MyIgSource is a unique community with helpful information, resources, and peer-to-peer support for those living with primary immunodeficiency. Now, I’m in my 30s and pregnant with my first child. When the doctor said everything was “normal” for the baby at my 20-week ultrasound, I cried tears of joy. I had never heard a doctor say that to me before. For my child, having a mom with PI will be his normal, and we’ll navigate life with it together. 1 Ballow, M., et al., (2019). Antibody Immune Deficiencies. In Patient & Family Handbook for Primary Immunodeficiency diseases (6th ed., pp. 18–20). Textbook, IDF Immune Deficiency Foundation. 2 McCusker, C., Upton, J., & Warrington, R. (2018). Primary immunodeficiency. Allergy, Asthma & Clinical Immunology, 14(S2), 2. 3 Immune Deficiency Foundation. About Primary Immunodeficiencies | Immune Deficiency Foundation. (n.d.). Retrieved March 16, 2022, from 4 Ballow, M., et al., (2019). Antibody Immune Deficiencies. In Patient & Family Handbook for Primary Immunodeficiency diseases (6th ed., pp. 23). Textbook, IDF Immune Deficiency Foundation. 5 Ballow, M., et al., (2019). Antibody Immune Deficiencies. In Patient & Family Handbook for Primary Immunodeficiency diseases (6th ed., pp. 13). Textbook, IDF Immune Deficiency Foundation. 6 Liebe, R. (2020, January 23). Plasma. Plasma Protein Therapeutics Association (PPTA). Retrieved March 16, 2022, from US-NON-7336v1.0 04/22

    Community Voices

    Do you have any tips regarding group growth?

    I started a group for selective antibody deficiency. This is a rather rare primary immunodeficiency. After an initial post, no one joined/ responded saying they had it. I kind of wonder what I could do to help the group grow? Should I just keep on posting with many hashtags and general information? Thanks a lot to the mighty team for the mail with tips! But I don’t really know how to use them… any advice is very much appreciated! Thanks in advance 😊

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